Exploring the other side of cancer care: The informal caregiver

ObjectivesTo identify the caregiver outcomes among relatives caring for patients with cancer and to examine the patient and family caregiver variables that predicted for caregiver burden and depression.MethodsOne hundred and thirty caregivers completed the Greek versions of the Burden Interview (BI), the Center of Epidemiology – Depression Scale (CES-D) and the Ways of Coping Questionnaire. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. One-way ANOVA and independent sample t-tests were used to test for differences in burden and depression in relation to demographic variables of interest. One-way ANOVA was used for examining differences in coping strategies.FindingsOne-way ANOVA showed that there are significant differences among the various educational levels (p < 0.001) and the income (p < 0.005) of the caregiver in terms of overall burden. 66.4% of caregivers had a depression above the usual cutoff point for depression. An independent samples t-test for possible gender differences, showed that there is a significant difference between males and females (p = 0.29). In regression analysis it was found that only caregiver's income and patient's age are statistically significant in predicting burden and depression. When considering high-burdened caregivers results showed that there are significant differences in the use of coping strategies (p < 0.001).ConclusionsCaregivers reported high levels of burden and depression. These outcomes of caregiving are related to several variables, but the caregiver's income and patient's age are predictive. Intervention strategies are needed to the vulnerable caregivers to help reduce burden and depression associated with caregiving.     

The effectiveness of manual-guided,problem-solving-based self-learning programme for family caregivers of people with recent-onset psychosis: A randomised controlled trial with 6-month follow-up

BackgroundFamily intervention for psychotic disorders is an integral part of psychiatric treatment with positive effects on patients’ mental state and relapse rate. However, the effect of such family-based intervention on caregivers’ psychological distress and well-being, especially in non-Western countries, has received comparatively much less attention.ObjectivesTo test the effects of guided problem-solving-based manual-guided self-learning programme for family caregivers of adults with recent-onset psychosis over a 6-month period of follow-up, when compared with those in usual family support service.DesignA single-centre randomised controlled trial, which was registered at ClinicalTrials.gov (NCT02391649), with a repeated-measures, two-arm (parallel-group) design.SettingsOne main psychiatric outpatient clinic in the New Territories of Hong Kong.ParticipantsA random sample of 116 family caregiverss of adult outpatients with recent-onset psychosis.MethodsFollowing pre-test measurement, caregivers were assigned randomly to one of two study groups: a 5-month self-help, problem-solving-based manual-guided self-learning (or bibliotherapy) programme (in addition to usual care), or usual family support service only. Varieties of patient and caregiver health outcomes were assessed and compared at baseline and at 1-week and 6-month post-intervention.ResultsOne hundred and eleven (96%) caregivers completed the 6-month follow-up (two post-tests); 55 of them (95%) completed ≥4 modules and attended ≥2 review sessions (i.e., 75% of the intervention). The family participants’ mean age was about 38 years and over 64% of them were female and patient's parent or spouse. Multivariate analyses of variance indicated that the manual-guided self-learning group reported significantly greater improvements than the usual care group in family burden [F(1,110) = 6.21, p = 0.006] and caregiving experience [F(1,110) = 6.88, p = 0.0004], and patients’ psychotic symptoms [F(1,110) = 6.25, p = 0.0003], functioning [F(1,110) = 7.01, p = 0.0005] and number of hospitalisations [F(1,110) = 5.71, p = 0.005] over 6-month follow-up.ConclusionsProblem-solving-based, manual-guided self-learning programme for family caregivers of adults with recent-onset psychosis can be an effective self-help programme and provide medium-term benefits to patients’ and caregivers’ mental health and duration of patients’ re-hospitalisations.     

Effect of a multidisciplinary supportive program for family caregivers of patients with heart failure on caregiver burden,quality of life,and depression: A randomized controlled study

BackgroundCaregivers of patients with heart failure experience burden and negative health outcomes. Adequate support for family caregivers improves their well-being and the quality of care provided to the patients. However, little is known about the benefits of interventions for caregivers of patients with heart failure in China.ObjectivesTo test the effects of a multidisciplinary supportive program for family caregivers on caregiver burden, quality of life, and depression.DesignA randomized controlled design with repeated measures was used in this study.MethodsA total of 118 participants were randomized into experimental (n = 59) and control groups (n = 59) from May to December 2014 in one hospital in Chengdu, People's Republic of China. Participants in the experimental group received a 3-month multidisciplinary supportive program, consisting of three 60-min sessions of group classes, three 30-min peer support groups, and regular telephone follow-ups and consultations, while participants in the control group received usual care only. Outcomes were caregiver burden, quality of life, and depression. Data were collected at baseline, post-test (3 months after discharge), and 3 months after post-test (6 months after discharge). The repeated measures analysis of variance was used to examine the effects of groups, changes over time, and time-group interaction on outcome variables.ResultsThere were significant improvements in caregiver burden, mental health, and depression after post-test and 3 months after post-test in the experimental group. However, there was no significant improvement in caregivers’ physical health at either 3 or 6 months following discharge.ConclusionsA multidisciplinary supportive program for caregivers of heart failure patients had positive effects and provides a unique perspective of an intervention considering Chinese culture and customs.     

Outcomes for family carers of a nurse-delivered hospital discharge intervention for older people (the Further Enabling Care at Home Program): Single blind randomised controlled trial

BackgroundHospital discharge of older people receiving care at home offers a salient opportunity to identify and address their family caregivers’ self-identified support needs.ObjectivesThis study tested the hypothesis that the extent to which family caregivers of older people discharged home from hospital felt prepared to provide care at home would be positively influenced by their inclusion in the new Further Enabling Care at Home program.DesignThis single-blind randomised controlled trial compared outcomes from usual care alone with those from usual care plus the new program. The program, delivered by a specially trained nurse over the telephone, included: support to facilitate understanding of the patient’s discharge letter; caregiver support needs assessment; caregiver prioritisation of urgent needs; and collaborative guidance, from the nurse, regarding accessing supports.Setting and participantsDyads were recruited from the medical assessment unit of a Western Australian metropolitan public hospital. Each dyad comprised a patient aged 70 years or older plus an English speaking family caregiver.MethodsThe primary outcome was the caregiver’s self-reported preparedness to provide care for the patient. Data collection time points were designated as: Time 1, within four days of discharge; Time 2, 15–21 days after discharge; Time 3, six weeks after discharge. Other measures included caregivers’ ratings of: their health, patients’ symptoms and independence, caregiver strain, family well-being, caregiver stress, and positive appraisals of caregiving. Data were collected by telephone.ResultsComplete data sets were obtained from 62 intervention group caregivers and 79 controls. Groups were equivalent at baseline. Needs prioritised most often by caregivers were: to know whom to contact and what to expect in the future and to access practical help at home. Support guidance included how to: access help, information, and resources; develop crisis plans; obtain referrals and services; and organise legal requirements.Compared to controls, preparedness to care improved in the intervention group from Time 1 to Time 2 (effect size = 0.52; p = 0.006) and from Time 1 to Time 3 (effect size = 0.43; p = 0.019). These improvements corresponded to a change of approximately 2 points on the Preparedness for Caregiving instrument. Small but significant positive impacts were also observed in other outcomes, including caregiver strain.ConclusionsThese unequivocal findings provide a basis for considering the Furthering Enabling Care at Home program’s implementation in this and other similar settings. Further testing is required to determine the generalisability of results.     

Impact of visuospatial neglect post-stroke on daily activities,participation and informal caregiver burden: A systematic review

ObjectivesVisuospatial neglect (VSN) is a common cognitive disorder after stroke. The primary aim of this systematic review was to provide an overview of the impact of VSN in 3 aspects: (1) activities of daily living (ADL), (2) participation, and (3) caregiver burden. The second aim was to investigate the differences in studies focusing on populations with mean age < 65 versus ≥ 65 years.MethodsPubMed, EMBASE, Web of Science, Cochrane Library, Emcare, PsychINFO, Academic Search Premier and CENTRAL were searched systematically. Quality was assessed with the Mixed Methods Appraisal Tool.ResultsOf the 115 included studies, 104 provided outcomes on ADL, 15 on participation (4 studies with mean age ≥ 65), and 2 on caregiver burden (1 study with mean age ≥ 65). Quality assessment yielded scores ranging from 0 to 100%. VSN had a negative impact on ADL (i.e., independence during ADL and performance in self-care, household tasks, reading, writing, walking, wheelchair navigation) and participation (i.e., driving, community mobility, orientation, work). The impact of VSN on fulfilling social roles was unclear. VSN had a negative effect on caregiver burden. We found no clear age-related differences.Conclusions and implicationsVSN has a negative impact not only on patients’ independence but particularly on the performance of ADL. Despite the far fewer studies of VSN as compared with ADL, VSN also seems to hamper participation and increase caregiver burden, but further research is needed. Because of the large impact, VSN should be systematically and carefully assessed during rehabilitation. A considerable number of different instruments were used to diagnose VSN. Diagnosing VSN at more than one level [function (i.e., pen-and-paper test), activities, and participation] is strongly recommended. Consensus is needed on how to assess VSN and its negative impact for research and rehabilitation practice.Systematic review Registration No.PROSPERPO Registration No. CRD42018087483.     

Patient and caregiver expectations of emergency department care: A scoping literature review

BackgroundCommunication between health care providers (HCPs) and patients and/or their caregivers in the chaotic emergency department (ED) context can be challenging and potentially impact health outcomes and patient satisfaction. Studies examining strategies to improve communication of patient and caregivers expectations of care in an ED are widely dispersed.MethodsWe conducted a scoping review of the published and grey literature to examine the extent, range and nature of existing research evidence regarding strategies to enhance communication of patient and caregiver expectations of care in an ED.ResultsOf the 599 articles retrieved, 24 met the inclusion criteria. Most of the studies identified included patients (n = 9) or caregivers (n = 8) as the population of interest, while the remainder examined the expectations of a mix of patients, parents/caregivers, and/or HCPs (n = 7). The majority (n = 21) of the studies did not communicate patient/caregiver expectations to HCPs.ConclusionThis scoping review highlights the paucity of available research literature evaluating strategies to communicate patient and caregiver ED expectations. Our findings identify the need for experimental designs in future studies to evaluate implementation strategies for ED expectation tools with a particular emphasis on measuring the impact of sharing patient expectations with HCPs.     

Measuring the expressed emotion in Chinese family caregivers of persons with dementia: Validation of a Chinese version of the Family Attitude Scale

BackgroundExpressed emotion (EE) captures the affective quality of the relationship between family caregivers and their care recipients and is known to increase the risk of poor health outcomes for caregiving dyads. Little is known about expressed emotion in the context of caregiving for persons with dementia, especially in non-Western cultures. The Family Attitude Scale (FAS) is a psychometrically sound self-reporting measure for EE. Its use in the examination of caregiving for patients with dementia has not yet been explored.ObjectivesThis study was performed to examine the psychometric properties of the Chinese version of the FAS (FAS-C) in Chinese caregivers of relatives with dementia, and its validity in predicting severe depressive symptoms among the caregivers.MethodsThe FAS was translated into Chinese using Brislin's model. Two expert panels evaluated the semantic equivalence and content validity of this Chinese version (FAS-C), respectively. A total of 123 Chinese primary caregivers of relatives with dementia were recruited from three elderly community care centers in Hong Kong. The FAS-C was administered with the Chinese versions of the 5-item Mental Health Inventory (MHI-5), the Zarit Burden Interview (ZBI) and the Revised Memory and Behavioral Problem Checklist (RMBPC).ResultsThe FAS-C had excellent semantic equivalence with the original version and a content validity index of 0.92. Exploratory factor analysis identified a three-factor structure for the FAS-C (hostile acts, criticism and distancing). Cronbach's alpha of the FAS-C was 0.92. Pearson's correlation indicated that there were significant associations between a higher score on the FAS-C and greater caregiver burden (r = 0.66, p < 0.001), poorer mental health of the caregivers (r = −0.65, p < 0.001) and a higher level of dementia-related symptoms (frequency of symptoms: r = 0.45, p < 0.001; symptom disturbance: r = 0.51, p < 0.001), which serves to suggest its construct validity. For detecting severe depressive symptoms of the family caregivers, the receiving operating characteristics (ROC) curve had an area under curve of 0.78 (95% confidence interval (CI) = 0.69–0.87, p < 0.0001). The optimal cut-off score was >47 with a sensitivity of 0.720 (95% CI = 0.506–0.879) and specificity of 0.742 (95% CI = 0.643–0.826).ConclusionsThe FAS-C is a reliable and valid measure to assess the affective quality of the relationship between Chinese caregivers and their relatives with dementia. It also has acceptable predictability in identifying family caregivers with severe depressive symptoms.     

Examining Caregiver Outcomes in the CONNECT Intervention for Patients With Advanced Cancer

ContextPalliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood.ObjectivesTo determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer.MethodsIn this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0–48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0–21; HADS-D, range 0–21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0–189).ResultsWe enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07–0.29, P = 0.90), depression (adjusted mean difference -0.22, 95% CI -0.97–0.55, P = 0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25–1.43, P = 0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95–17.77, P = 0.030).ConclusionCaregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions.     

Tools for measuring the impact of informal caregiving of the elderly: a literature review

Objectives(1) Describe available tools to assess the impact of informal caregiving of home-dwelling elderly, (2) identify an acceptable and appropriate tool for a study aiming at the evaluation of the impact of innovative projects for care and support of care for elderly at home, on their main informal caregiver and (3) find a definition of ‘main informal caregiver’.Study designLiterature review by searches of the following electronic databases: MEDLINE, CINAHL, EMBASE, using firstly keywords and exclusion criteria, then citations and reference search.ResultsThis review has identified 105 scales assessing the impact of informal caregiving of the elderly. Those scales were described in terms of characteristics of the care receiver population, content and psychometric properties. Most retrieved scales are intended to measure the impact of caregiving on caregivers’ health of elderly with dementia (n = 49), overall elderly (n = 21), cancer patients (n = 7), chronically ill patients (n = 7), psychiatric patients (n = 7) and stroke patients (n = 3).Dimensions of the impact of caregiving were classified into its positive (n = 34), negative (n = 55) or neither positive nor negative (n = 16) consequences on the informal caregiver's health. Internal consistency varied from 0.48 to 0.99 and in half of the cases (n = 52), construct validity was reported. Scales comprised 1–200 questions. The Zarit Burden Interview (ZBI-12) was selected for the study and an operational definition of the concept of “main informal caregiver” was constructed.ConclusionThis review identified a large number of scales that can be used to assess the impact of caregiving, viewed through different dimensions. The Zarit Burden Interview can be a useful tool for researchers and clinicians due to its user-friendliness, extensively validation and international use, making comparisons between groups possible. Despite the fact that only the original version of each scale was selected, this inventory should be a useful tool for intervention studies and even clinicians work.     

Minor Cognitive Impairments in Cancer Patients Magnify the Effect of Caregiver Preferences on End-of-Life Care

ContextCognitive impairment commonly affects cancer patients.ObjectivesTo examine whether minor cognitive impairment in patients with advanced cancer is associated with the intensity of end-of-life (EOL) care or modifies the influence of patient and caregiver preferences on the intensity of EOL care.MethodsData were derived from structured interviews with 221 advanced cancer patient-caregiver dyads in the Coping with Cancer Study, a multisite, longitudinal cohort study. Deficits in patients' cognitive function were identified using the Short Portable Mental Status Questionnaire (SPMSQ). Patients and caregivers reported preferences regarding life-extending vs. symptom-directed care. Information regarding EOL care was obtained from postmortem interviews with caregivers. Logistic regression analyses modeled main and interactive effects of patients' cognitive impairment and patients' and caregivers' treatment preferences on intensive EOL care.ResultsCognitive impairment was associated with less intensive EOL care (odds ratio [OR] = 0.56; 95% confidence interval [CI]: 0.34–0.91). Patients and caregivers had poor agreement regarding preferences for life-extending vs. symptom-directed care (Φ = 0.10; χ² = 2.32, df = 1, P = 0.13). Patient preference for life-extending care predicted intensive EOL care irrespective of cognitive status (adjusted odds ratio [AOR] = 2.11; 95% CI: 1.04–4.28). For patients with no errors on the SPMSQ, caregiver preference for life-extending care was unrelated to intensive EOL care (AOR = 0.40; 95% CI: 0.09–1.77). However, the association between caregiver preference for life-extending care and intensive EOL care increased by nearly a factor of seven for every error on the SPMSQ (interaction AOR = 6.90; 95% CI: 1.40–34.12).ConclusionCognitive impairment in patients with advanced cancer is associated with less intensive EOL care. Caregivers' influence on intensive EOL care dramatically increases with minor declines in patients' cognitive function.     

Relationships between family resilience,breast cancer survivors’ individual resilience,and caregiver burden: A cross-sectional study

BackgroundCaregivers of breast cancer survivors experience various types of burden, which in turn is linked to patients’ physical and psychological status. Family resilience might be able to decrease caregiver burden and facilitate survivors’ individual resilience, and individual resilience might be related to caregiver burden. Nevertheless, these relationships have not yet been confirmed.ObjectiveTo determine the relationships between family resilience, breast cancer survivors’ resilience, and principal caregivers’ caregiver burden, as well as determine whether breast cancer survivors’ individual resilience plays a mediating role in the relationship between family resilience and caregiver burden.DesignCross-sectional study design.SettingThe comprehensive cancer center of a public hospital in Shandong Province, China.ParticipantsThe sample comprised 108 dyads of early-stage breast cancer survivors and their principal caregivers.MethodsThe principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview, while the breast cancer survivors completed the 10-item Chinese version of the Connor-Davidson Resilience Scale and provided their sociodemographic information. The mediating effect of individual resilience was estimated using the bootstrap method via IBM SPSS Amos 21.0.ResultsCaregiver burden was significantly negatively associated with both family resilience and breast cancer survivors' individual resilience (both p < .01). Furthermore, individual resilience mediated the relationship between family resilience and caregiver burden (b = −0.052; 95% confidence interval: −.412, −.036).ConclusionsThe findings suggest that both family resilience and breast cancer survivors’ individual resilience may ease caregiver burden among the principal caregivers of breast cancer survivors, and family resilience tends to promote the survivors’ individual resilience. Therefore, family resilience and survivors’ individual resilience should be enhanced for breast cancer survivors and their family to ease the principal caregivers’ caregiver burden.     

MOTIVATional intErviewing to improve self-care in Heart Failure patients (MOTIVATE-HF): Study protocol of a three-arm multicenter randomized controlled trial

AimsHeart Failure (HF) self-care improves patient outcomes but trials designed to improve HF self-care have shown inconsistent results. Interventions may be more effective in improving self-care if they mobilize support from providers, promote self-efficacy, increase understanding of HF, increase the family involvement, and are individualized. All of these elements are emphasized in motivational interviewing (MI); few trials have been conducted using MI in HF patients and rarely have caregivers been involved in MI interventions. The aim of this study will be to evaluate if MI improves self-care maintenance in HF patients, and to determine if MI improves the following secondary outcomes: a) in HF patients: self-care management, self-care confidence, symptom perception, quality of life, anxiety/depression, cognition, sleep quality, mutuality with caregiver, hospitalizations, use of emergency services, and mortality; b) in caregivers: caregiver contribution to self-care, quality of life, anxiety/depression, sleep, mutuality with patient, preparedness, and social support.MethodsA three-arm randomized controlled trial will be conducted in a sample of 240 HF patients and caregivers. Patients and caregivers will be randomized to the following arms: 1) MI intervention to patients only; 2) MI intervention to patients and caregivers; 3) standard of care to patients and caregivers. The primary outcome will be measured in patients 3 months after enrollment. Primary and secondary outcomes also will be evaluated 6, 9 and 12 months after enrollment.ConclusionThis study will contribute to understand if MI provided to patients and caregivers can improve self-care. Because HF is rising in prevalence, findings can be useful to reduce the burden of the disease.     

High perceived caregiver burden for relatives of patients following hip fracture surgery

Purpose: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery.

Methods: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed at four points during 1 year following hip fracture surgery in a regional hospital in southern Spain. The perceived caregiver burden was assessed using the Caregiver Strain Index (0–13 points).

Results: The mean (Standard Deviation) age of the 172 caregivers was 56 (13) years, of which 133 (77%) were woman and 94 (55%) were daughters of the patient. Seventy-nine of the 172 (46%) caregivers perceived a high level of burden (≥?7 points on the Caregiver Strain Index) at the hospital. The corresponding numbers with perceived high level of burden at 1-month, 3-months, and 1-year were 87 (50%), 61 (36%), and 45 (26%) caregivers. A low pre-fracture functional status, post-operative complications, older age of patients, and younger age of caregivers negatively influence caregiver burden at 1-year.

Conclusions: The main caregiver is predominantly female and is most often the daughter of the patient. New treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden.

• Implications for rehabilitation

• The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing her burden of care should be included as one of the objectives of rehabilitation treatment.

• The caregivers of hip fracture patients must be considered as part of the treatment during the patient’s recovery period, and patient handling training should be provided to the caregivers of hip fracture patients during the hospital stay to prepare the process of going back home.

• The caregivers of older patients, those with a low pre-fracture functional level, and of those who suffered post-operative complications, should receive more attention prior to hospital discharge and receive more assistance at home to reduce caregiver burden.

     

Participant characteristics before and 4 months after attendance at a family caregiver cancer education program

Recent trends in health care have placed an increased burden on cancer caregivers. In response, nurses and social workers have been taught to implement a 6-hour psychoeducation program for cancer caregivers that addresses symptom management, psychosocial support, and resource identification. Longitudinal data from a convenience sample of 187 cancer caregivers who attended the program are reported. Data were collected before attendance and 4 months later. Findings confirm the chronic and consuming nature of cancer caregiving. Data indicate that perception of burden did not worsen even when caregiving tasks increased in intensity. Caregiver perceptions of their own health actually improved over time. In addition, the number of caregivers who said they were well informed and confident about caregiving after program attendance increased over time. Further study that randomizes caregivers to intervention/control groups is needed to substantiate the role of similar programs in enhancing caregiver skills and minimizing caregiver burden over time.